Are multiple nuclear dot ANA patterns ever ... - PBC Foundation

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Are multiple nuclear dot ANA patterns ever seen in "normal" people?

heydanny
heydanny

Hey folks!

I was hoping you all might be able to answer a few questions I haven't been able to answer on my own.

For brief context, I've been experiencing a number of unknown health issues over the last several years. The TL;DR symptoms have been:

- Soul-crushing fatigue

- Arthritic pain for the first few years (hands, feet) and then biliary colic-ish (middle shoulder blades, front upper quadrant) pain in the last few years

- Hodgepodge of autonomic symptoms (thus far attributed to diagnosis of postural orthostatic tachycardia syndrome)

I've had a positive ANA a few times since everything started, however my symptoms have been general enough / titers low enough that it was mostly dismissed because healthy people have positive ANAs blabla.

I was recently sent back to a rheumatologist to be looked over again since it has been a few years since I've seen one. She ran another ANA panel and I tested positive again with a 1:160 speckled + 1:320 multiple nuclear dot pattern - to which I am being hot potatoed back into the referral process (she wants me to see a liver doctor 3ish months from now).

Although I understand my doctors are the final say on interpreting my situation, I was hoping if you folks could answer a few questions I haven't been able to answer on my own.

I keep seeing reference to the multiple nuclear dot pattern being "highly specific" to PBC. Is it ever not meaningful? Knowing what you know from your PBC post-diagnosis education, how insistent might you be for further investigation if you had my labs and ran into a dismissive doctor?

I've read that PBC usually comes with elevated liver enzymes. For at least as long as I've been sick, I've had elevated bilirubin usually somewhere between 1.5 to 2.0 mg/dL (0.0 - 1.2 ref). Until now, I haven't thought anything of my periodic yellow eyes because I was told I had Gilbert's Syndrome by someone somewhere along the line. I'm not aware of ever having elevated ALT, AST, ALP etc., only the bilirubin. Does elevated bilirubin ever occur in isolation without the other markers in PBC? I'm unsure if it's just a coincidence.

For the first few years of being sick, I was super itchy all the time (especially at night). Over time, the itching lessened and now only happens infrequently. I haven't thought much of it since the fatigue / pain took center stage, but I've read that severe itching is a thing with PBC. Can symptoms like that ever spontaneously resolve themselves without treatment?

Any information, resources, or personal experiences you all might be able to share would be really cool.

Thanks for taking the time to read!

4 Replies

Are you a member of the PBC Foundation? If not it is free to join and they have a wealth of information in the member's section of their website. You may like to look at the following link which is taken from information for Professionals but it may authoratively answer some of your questions.

pbcfoundation.org.uk/health...

I cannot see which country you are from but your picture leads me to think that you are a younger member of the community which may be why it is difficult for you to get a diagnosis. The current thinking is that PBC presents somewhere between 40 and 65 but many younger women are finding they have PBC at much earlier ages I am sure I read the other day of a teenager who had been diagnosed. It is unusual for men to be diagnosed with PBC and therefore doctors again do not look to PBC as a diagnosis. More men are diagnosed with something called PSC but I cannot remember its full name.

If you do not have confidence in your doctor are you in a position to find another?

Hopefully after the weekend someone with a better understanding of blood results will come along a be able to help you.

best wishes

heydanny
heydanny in reply to butterflyEi

I hadn't thought about joining the PBC Foundation since I figured it was more for people who are officially diagnosed. The labs I mentioned above were from my rheumatologist and she wants me to see a hepatologist to talk things over.. so I don't really know what all this might mean for me.

You're right in that I was younger (26) when I got hit with the first wave of symptoms (unrelenting fatigue unlike anything I had ever experienced). Sadly I am currently 32 (from the United States btw) and have gone all this time with no direction from any doctors I've seen. For the first few years, none of my labs reflected the symptoms I was experiencing, so any doctor I saw either said they didn't know what was happening to me, or they got lazy and implied this was all psychological.

Finding the right doctors before this has been extremely difficult. No one has ever really taken charge of the situation and told me where I should go to get help. I've honestly felt like I've been existing in some alternate dimension over the last six years - constantly just making my own guesses about how to manage these symptoms. Before I started getting sick, it wasn't even a possibility in my head that a person could get this sick, have no idea what was happening, and have no one to turn to for help. I had the stupidly naive mindset that when you get sick, you just go to the doctor, and everything will be okay.

My symptoms ramped up a little over two years ago and I started getting abnormal results. They started taking things more seriously after I had a tilt table test and was diagnosed with POTS, but it still wasn't enough to get a doctor to take charge. By that point I was too discouraged and too sick to try anymore. I can't force any doctor to care enough to not give up on me and it's too much to deal with that emotional pain + the actual symptoms.

The only reason I saw this rheumatologist now is because my mom pushed me into it. I know I need help but.. I dunno. The only thing I know I have control over in this situation is the ability to educate myself about what could be happening. I wish I felt more confident that I was interpreting the information out there correctly. The world doesn't make sense anymore since I got sick.

I appreciate the reply, butterflyEi. Hope you had a good weekend!

butterflyEi
butterflyEi in reply to heydanny

heydanny, the UK has a different labs system to that of America. Have you found PBCers.org in your searches? It is an American organisation based in Texas I believe. Like the PBC Foundation they have a presence on face book. you may find someone who can read your results. hope you find an answer soon. best wishes

You have to find a primary doctor that cares enough to help you manage this entire process. It is challenging enough to be unwell without having to deal with this unsupported by medical experts.

Maybe your friends & family have a primary doctor that they really like & is very good that you can go to. Once you have this doctor, he/she can refer you to the appropriate doctors.

Seems like the rheumatologist is helpful, perhaps she can recommend a primary care doctor to manage your medical needs or if she is also a primary care doctor & you feel she cares, work with her to get your answers.

Definitely be your own advocate about your health. Insist on answers & finding a doctor who is sympathetic to your needs. Good Luck!

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